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New to this...PLEASE HELP! I Feel like I'm going insane...

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Posted 5/2/2012 4:11 PM (GMT 0)
I have a positive Western Blot, Postive IGM band of 23,39,41 and postive IGG band of 18 and 41.

I have been to several doctors here in Florida as my primary care doctor and Rhemotoligst diagnosed me with have Lymes over 6 months ago. I have seen 5 other specialist including 3 infectious disease doctors and they tell me we don't have Lymes here in Florida and even if I did have it I was treated with the Doxycycline and that should have cured it.

My symptons are getting worse everyday and now I'm starting to have stabbing pains in my legs that bring me down to the ground crying. I have had a low grade fever for over 8 months, migrains, blurred vision, extreme fatigue, legs hurt ALL the time, confusion, and many others.

Is it possible that I dont' have lymes with the results above? The doctors are making me feel hopeless!!!

Thanks guys,

Michelle

Posted 5/2/2012 4:42 PM (GMT 0)
I've heard that it is VERY unlikely that you would get a false positive....false negatives are much more likely. Have you found a lyme literate doctor (LLMD)?

I'm sure some of the moderators will be along shortly to offer their advice.

P.S. I don't believe the theory one bit that "lyme isn't here or there".... URG
Posted 5/2/2012 4:43 PM (GMT 0)
One more thing to add....it makes me crazy when these doctors question blood work...I mean, if you tested positive for say diabetes or something like that...would they question those results? I don't think so!
Posted 5/2/2012 4:44 PM (GMT 0)
And seriously...why do they even run lyme blood tests if they are going to tell you you don't have it when it turns up positive? I mean...come on!!!

Okay, I'm done :)
Posted 5/2/2012 4:54 PM (GMT 0)
Thanks for the response and I have no idea, I never knew there was such a controversy over Lyme.

These doctors are making me feel like I'm insane and a hypercondriac.

My biggest concern is my legs and fatigue. It's so hard to even walk nowadays and then these sharp shooting pains are horrible.

I am a mom of five kids and I can't live this way!

Posted 5/2/2012 4:57 PM (GMT 0)
Mlyle76:

Don't worry too much. I have some of the same symptoms. However, know this...that once you get started on treatment, those symptoms should clear up. I'm going through quite a flair right now because I went off my treatment too early but I had crazy symptoms when my lyme first started, but after a while, most of them cleared up. I just quit too early...

Hang in there.
Posted 5/2/2012 5:11 PM (GMT 0)
Hang in there and trust yourself. Doctors are like any other industry and there are good and bad. With so much controversy on lymes it seems most are playing on the safe side not so much the patient. With that being said you know yourself and if there is a problem stick to your guns.

Again a moderator will be along to assist but know your not alone.
Posted 5/2/2012 5:15 PM (GMT 0)
Hello,

I had the same problem as you. I had 2 negative ELISA tests went to a rheumatologist and other doctors who refused to run a western blot and told me I was just stressed or had an eating disorder lol. When I finally had one done, I ended up being fully positive even by CDC criteria.

I was told that I was overtreated for Lyme (with 28 days of doxy) and that there were no co-infections in my state (in the northeast). The rheumatologist was so condescending and rude quoting Steere's studies to me. When I quoted some studies back to him, he became enraged and suggested I had a psychological problem and should go get help "upstairs." I think he meant upstairs where the psychologist's office was in the building, but who knows? LOL. He now has a very bad review online from me :)

I would not question the blood work. You have several Lyme-specific bands showing up. I was VERY skeptical at first too, but then when doctors started treating me like the one did above, I started to research more as to why they were so enraged from simple questions. I also decided to get a CD-57 done at the same time as my western blot. I figured if my test came back negative but the CD-57 was low, I would still have some evidence of Lyme for my own validation. Do you have a LLMD you can see to help you?
Posted 5/2/2012 6:16 PM (GMT 0)
You have to find an LLMD - your bands - 23, 39 and 41 are the same as mine - you have Lyme disease - PERIOD. Find an LLMD and begin to do a proper course of treatment from a doctor who knows the lay of the land...
Posted 5/2/2012 7:26 PM (GMT 0)
I'm so thankful that I found this forum and appreciate all the support. I've just been feeling so worthless lately and in so much pain. I have a very high pain tolerance and always very active but it has just gotten the best of me lately. I did recently locate a physican that treats lymes however I can not get in to see him until July. I am ready to do whatever it takes to feel like "me" again.
Posted 5/2/2012 7:53 PM (GMT 0)
Mlyle76:

I would call that lyme doctor's office every single morning and ask if they have a cancellation. That is what I did and I was in within a week (better than the 3 months I was originally given). That way they will know you are serious and once they have a cancellation, I bet they will call you.
Posted 5/2/2012 8:38 PM (GMT 0)
Hi,

I'm Dan's Mom, the one who helps people find the names of doctors in their area. If you are interested, I have the name of someone in FL who can help you find a doctor in the meantime as well as give you all sorts of information and support. You can email me at [email protected].

Take Care,
Karen
Posted 5/2/2012 11:07 PM (GMT 0)
Hi Dan's Mom!!!
Posted 5/3/2012 12:12 AM (GMT 0)
Hi and welcome to the forum. So sorry to hear you are getting the runaround and not feeling good at the same time. It's horrible isn't it. Many of us here have gone through the same thing. There is such controversy surrounding all facets of lyme - treatment, testing, etc.

Your test is a positive lyme test and your symptoms are very consistent with lyme. But don't fret. Just move on. Get to a proper doctor and start with proper treatment and you'll be on your way to getting well. Its a long slow journey but we're here for you. The most important thing is having confidence in yourself that you will get well.

Research, research, research. It will become your best friend.
Posted 5/3/2012 3:30 AM (GMT 0)
Hi, mlyle76 - welcome to the forum. I'm sorry you have to be here, but I hope we can be of some help!

I hope you do get in to see a doctor soon - it's a bit of a heavy read but the book "Cure Unknown" is really informative as far as the Lyme controversy - I know that reading it helped to quiet some of my doubts and answer a lot of my questions.

It really is a shame - every time I hear a story like yours I can't believe it, even though I've heard it so many times - doctors saying you don't have Lyme, 28 days of doxy is enough, getting annoyed with you for pointing out contradictory information, assuming it's psychological, all of it. It's hard enough to navigate through all of this without having to work so hard to get doctors on our sides! Thank goodness for LLMDs.

Have you looked through the "New to lyme" thread yet? There's a post on there about detoxing that might be helpful for you - a lot of us find that detoxing with lyme is really important, little things like drinking plenty of lemon water, trying out the epsom salt baths, skin brushing, etc. might make a difference in some of your symptoms. Hang in there - it will get better!
Posted 5/3/2012 3:49 AM (GMT 0)
I'm pretty new to lyme, myself, and I have found it very demoralizing. My regular Dr. told me that, since my rash was in the summer, it should be cleared up by now. He asked if I had been in the N.E. States, cuz that's the only place lyme exists. He upped my antidepressant dosage, mused about fibromyalgia and CFS...since the Eliza was negative, it's obviously not lyme, he figures.

In the meantime I found a decent LLND (Naturopath) who is going to be treating me. She consults with Dr. Murikami, so I'm in good hands.

In order to begin the treatment, my LLND asked me to go see my doctor to arrange monthly labs for CBC and liver enzymes so we can monitor during treatment.

Unwilling to go see my ignorant doctor, I went to another dr, hoping this one would be more sophisticated about lyme.

Well, I was pretty much laughed out of the office, especially with regards to the Igenex test. This doctor told me of two previous patients who were positive in the Igenex test who were subsequently tested locally (In B.C.) and the results were negative. HAHA she laughed, it's just so silly. She wouldn't specify what type of tests they were.

She wrote me out an order for monthly tests for one year, so at least I got what I went in for. Another thing I got that I didn't go in for was stress and humiliation.

HOW CAN PHYSICIANS BE SO IGNORANT? It's mind blowing.

So, long storey short, I know how you are feeling. I think that most of us do!

In the meantime, I have been detoxing, taking supplements such as magnesium, coenzyme Q10, etc, and this has made me feel better - not as many muscle twitches, muscle aches, headaches, and so on.

Good luck on your journey.
Posted 5/3/2012 12:11 PM (GMT 0)
Again, you all have been a big help and I want to say thank you again.

It really is exhausting to keep fighting the Lymes and fighting the doctors.  I will call the doctors office everyday to see if they have any cancellations. My biggest fear is he is not a LLMD (but he does attend the Lyme  meetings and was on the referring LDA website) that I will wait all this time to see him and he will tell me the same thing that the other 5 doctors have told me after waiting to get in to see them for over two months.

I will also try the detox method in the meantime as I am willing to do anything at this point. I hate who I've become with this but I'm going to keep pushing forward and win this.

One more question? Are you ever "cured" from Lymes or does it just kinda go in remission and then have flair ups?

Michelle

Posted 5/3/2012 2:45 PM (GMT 0)
Hi mlyle76,

My doctor, for one, is one who believes that most Lyme recurrences are because the patient was not treated thoroughly. If there is anything left it will rear its ugly head again whenever you come under stress.

So I have been "almost finished treatment" for about six months now! As much as I would like to stop, I am still getting die off from introduction or scaling up of medications. The niggly little neck pain still comes on when I am tired. So I will keep listening to my doctor and get this completely out of my system.

Now, if I can just avoid getting reinfected!

One step at a time, though, Michelle. Just concentrate on finding a good LLMD that you trust and who is dedicated to getting you completely well. Don't settle for anyone who says you will just have to live with symptoms. Good luck!
Posted 5/3/2012 3:10 PM (GMT 0)
I too was disrespected by several doctors in my quest to find out what was wrong with me. Even when my research and history of Lyme indicated that is what it was, I tool was looked at as crazy. So frustrating while trying to get well!

@acheivinggrace how long have you been in treatment? sounds like you are getting close to wellness. I have been in treatment for 10 months and still fighting.....
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